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Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 1/30/2009 7:08 AM (GMT -6)   
Hi all.  Can't say I'm happy to be here but good to know this network exists. 
 
My sob story....years and years of PSAs in the 1.8-2.6 range, negative DREs ("nice small prostate" per my Internist - 22.8 cc's), no uriniary symtoms.  12/09 annual exam, PSA at 4.0 - too much of a jump for one year so I'm off to a Urology consult.  Urologist feels small nodule on the right side so we do 8 biopsies on 1/15/09.  Results 2 of 4, <5%, on left with a 3+4 Gleason.  4 of 4, 40%, on right with a 4+3 Gleason.  CT and bone scans negative.
 
Frankly, I'm floored by the lack of any real information out there about such a prevalent disease such as specialists by region for radiation, brachy, surgery, success rates, complication rates, etc.  We have to decide on a tx and a doctor with the same info everywhere, none of which is definitive.
 
I'm 61, 5'8", 260 lbs. from the Sarasota area of Florida and lucky enough to have a daughter-in-law who is an onocologic nurse in Urology at Sloan Kettering.  Double lucky to have my med coverage with Blue Cross - they've deemed Sloan and their docs as "in network".  My daughter-in-law is having all my stuff reviewed by their main guy, James Eastham.
 
So, once we decide on the tx, we then have to decide where to have it - here or in NY.  From the posts on this site, it's gonna be an interesting journey - nice to know there are others out there...
 
Signature on next post.
 
GF

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 1/30/2009 9:13 AM (GMT -6)   
Welcome here Godfather....sorry you had to join us, but now that you are here you will find many many new friends to share your journey with. It looks like you are right on target, getting information and a daughter-in-law to assist you with answer questions that we here can't. One thing that we can provide is our real world experience...something that sometimes gets lost with the doctors. They see the medical side...we can offer the human side. Lots of different treatment options and as you search each one, someone here will be able to give you their side of the treatment...sometimes good and sometimes not so good. But we will be here to support you in anyway we can.

Thanks for coming to our forum.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/30/2009 9:14 AM (GMT -6)   
Hello Godfather, and welcome here. I agree, we are always sorry that new men need to be here, but so thankful you found us. It's a good, supporting, knowledgable group of men and women. You do sound fortunate to have a daughter in law in the "biz" so to speak, she should be a comfort to you. I am just thankful to have a very experienced nurse for a wife. Sarasota area is nice, wife is from St. Pete, so I know the area well.

From looking at your stats, it was a good thing you had that biopsy done when you did. I have Blue Cross, and so far, in my PC travel, they have taken care of most eveyrthing. Know is the time to review all specs in your area and you say, in NY. That should give you a good range to work through.

Plenty of people here are experienced with most all treatments for advice, including open RP like mine, robotic rp - lots of those, radiation, "seeds", etc. Others are dealing with hormone treatments and others are considering alternative methods.

Ultimately, you will have to settle down on what is right for you and your situation, and when you do, we will be here to support you 100%.

Good luck to you, and once again, welcome.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/30/2009 10:11 AM (GMT -6)   
Hi Godfather,

Glad you found the board and it looks like you have a lot working in your favor from your family, insurance and a good hospital. Please continue to post as you move forward with your treatment.

Best wishes. Scott
Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


vs1vs2
Regular Member


Date Joined Dec 2008
Total Posts : 60
   Posted 1/30/2009 10:36 AM (GMT -6)   
Godfather, welcome to our little corner of the world. I think you will find many things here. I know I have and continue to learn. I speak to my wife often about the journey of so many here and how it helps me cope and learn. Best wishes in your treatment decisions. Hope to hear from you often.
Tim
Age at Dx:48, currently 49
PSA May 08 2.96
referred to uro
PSA June 08 3.44
biopsy 7/25/08-29 core samples
path 7/31/08-8 of 29 PCa/10% involved L/R base and mid
high grade PIN in apex/seminal vesicles clear stage GS 3/3=6 pT2a
10/7/08 robotic at Cleveland Clinic-Dr. Kaouk
10/10/08 path GS 3/3=6 pT2c
cancer contained/neg margins
PSA Jan/09 .03


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/30/2009 10:56 AM (GMT -6)   
Hello Godfather.....I saw that you are thinking of having Dr. Eastham do your surgery. We liked him. He is friendly, thoughtful, and seems to be caring.., He is in Scardino's group. Pete had the salvage surgery by him, and which is much different from what you will have. The salvage is the cleanup crew after the initial treatment fails....I don't like the name, but that is what they call it...Sloan Kettering is a very busy place. Hours of waiting at appointments, and then seeing the doctor for a few minutes....Waiting rooms always filled whatever time you go.....But I guess that means they have practice.... You will learn a lot by coming to this forum. There are many very smart guys here.....and people who have been through it all....Good luck to you. Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


Gmike
Regular Member


Date Joined Jan 2009
Total Posts : 48
   Posted 1/30/2009 11:03 AM (GMT -6)   
Godfather,
I'm also in the Sarasota area. I have two friends who were treated at the Dattoli Cancer Center in Sarasota and speak very highly of it.

Mike

Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 1/30/2009 11:35 AM (GMT -6)   
Thanks to all. Mike, we're considering Datoli. Good to hear your friends had nice things to say. Also looking into going to Miami for LRP. So many choices, so little time...

GF (Tony)

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 1/30/2009 1:13 PM (GMT -6)   
Godfather...just a note here based on your remark..."so little time." Actually, you have all the time to research throughly before making a decision. I urge you not to "rush" to any one decision. Sure you are a gleason 7 so something has to be done...however your PSA is low so no need to rush to any decision right away. Take the time, several weeks or even months to decide...after all surgery can't even be performed until two months after biopsy.

Just so you know, I chose robotic assisted LRP for several reason. I could get the final pathological stage of my cancer...several other treatment options would be available should I have a recurrence....the minimal blood loss...and the prospect of a quicker and easier recovery (which turned out to be the case for me)

Just note that all treatments have similar outcomes and similar side effects. I know that makes it more difficult to decide from...so take your time and study all of them. You will find one that appeals to you.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/30/2009 1:17 PM (GMT -6)   
We can never have enough Tony's around here.

But I am sorry you are here. Welcome to HealingWell. This is a great support site and many great members here. Keep studying and learning. When you finally make that decision, then don't look back. It is important you are behind your decision. Let us know if there is any way we can help. The membership responds quickly and very well.

The Godfather was one of my favorite movies. "Keep your friends close and your enemies closer" is a favorite movie line for me. It applies to our enemy prostate cancer as well. LOL...

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 15, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 1/30/2009 12:09:21 PM (GMT-7)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/30/2009 1:45 PM (GMT -6)   
Godfather-Tony, Welcome to HW. Seems like you have things well in hand. WE all will follow your Journey with interest and friendship...
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4180
   Posted 1/30/2009 2:19 PM (GMT -6)   

Hello Godfather...sorry you have to be here but welcome.  Here are some of my thoughts:

1.  Echoing Les, don't rush into anything.  Take the time to do research and get multiple opinons.

2.  With your stats, you clearly have options...at the very least make sure you speak with experienced practioners from both surgery and radiation oncology.  By esperience, I mean at least 300 procedures.  This is true for ALL options but it's especially necessary to watch out for this should you choose davinci and there are still a lot of learners...but there are also many excellent docs with lots of experience.

3.  I live in SW Florida and have friends who have gone to Dattoli and are very pleased with their results.

4.  I'm the token brachytherapy patient on this site so if you want any details on that protocol I would be happy to respond...my experience is recent.  There are tons of guys and gals on this forum with surgery experience and they represent a wealth of knowledge should that be your route.

Let us know how your progress and how we can help.

Tudpock


Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
2 of 16 cores cancerous
27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 1/31/09.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/30/2009 3:59 PM (GMT -6)   
tudpock, you are not are token, your are our brachy wonder seed child poster boy. lol.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


strawberry man
Regular Member


Date Joined Dec 2008
Total Posts : 23
   Posted 1/30/2009 4:41 PM (GMT -6)   

Godfather,  sorry to hear you have joined the club you didn't want to be in!

Take care, you will be ok,  I am almost 7 months out from my surgery and doing well.

I had Divinci robotic surgery, I know some people that went the radiation route and they are fine also.

Look on the bright side, I took a physical this morning and had to pee,  I can do that now anytime with no problem,  it used to stress me out, I would drink a lot of water and then have to give a sample and i couldn't!

 

take care

 


Dx 4/21/08 psa 9.7  Age 58 OMG

Biopsy results  3 areas of  3+3=6 gleason

Di Vinci surgery 6/3/08

Post op 3 months and 6 months -  all clear

0 psa TYG  (thank you God)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/31/2009 7:00 AM (GMT -6)   
Welcome Godfather you gotta family here, you know what I'm sayin. Try to take a look at some humor along the way, it is hard to focus 24/7 on PCa without taking a break from that 'hit' on the streets. You never have to much armor in the PCa world, you can fight back without a tommy gun or grenades too. Sometimes you gotta use the brotherhood approach....ya know..connections....who do you know in Chicago or New York etc.
Maybe the syndicate can form a commitee and share their findings. Of course you know to be cautious and weary about:

toll booth stopping areas    (use reverse and leave that scene)
meetings with new strangers in long coats   (who knows what their packin)
two bit punks that get to close to your car, etc.  
drive by's 
strange packages showing up at your door step  (fishy stuff too)
keep away from equestrians is a good idea too  (no horsing around with PCa)
watch out for guys with rubber gloves on  (never know)

You might recognize those scenarios in the PCa world in a different form, you got tipped off be ready to encounter some of the possible b.s. or 'snow jobs'. You can always drop 'em and find another one too. When you do find the right deal for you, then make that doc or docs an offer they can't refuse.  You can even take the cotton out of your mouth after the proceedure. (lol)

Hope the humorous approach herein is acceptable to you and others....I always enjoy some humor....life is full of it, otherwise.

"I wouldn't join a club that would have me as a member"....Groucho Marx

Dx-2002 (The hit: 46.6 psa, guns 12 shots(took it in rearend too)-12 pos. biopsies, loaded/packed PCa 80-90%, Gleason stooges were 7,8,9's(he was the ulgiest one too), (total urinary blockage-I got hosed and ooooooooch-pain was like St. Valentines Day massacre), proceeded to bomb and nuke this sob with the big arsenal from guys in Detroit the Karmanos bros., yeah they neutrond this one I know I got alot of those bad guys. Current psa was .61 (recently and was falling, resumed white powered sustance to poison the PCa sob's.)
"Ya know what I'm sayin" yeah


 

Post Edited (zufus) : 2/1/2009 5:53:57 AM (GMT-7)


spisam
Regular Member


Date Joined Jan 2009
Total Posts : 47
   Posted 1/31/2009 7:43 PM (GMT -6)   

Hi Godfather,

My name is Sam and I'm from Delray Beach, Fl. On January 6, 09 I had PC surgery using DiVinci at Florida Hospital in Orlando. Dr Vipul Patel is my surgeon. He has performed several thousand procedures with robotics and is internationally known. He has a wonderful team to support him before, during and after surgery. They made me feel special. The Hospital itself is like a resort. I am very satisfied with Dr Patel and the results. Except for some leakage which is driving me crazy, after three weeks I feel great. After surgery, I stayed at a nearby hotel and was able to recuperate walk outside in the nice Florida weather which is a plus. I stayed near the hospital until the catheter was removed after 6 days.  I am confident you will make the right choice for you. 

 


Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 1/31/2009 9:53 PM (GMT -6)   
Sam (spisam)

Thanks. We're trying to find a top notch da Vinci surgeon within driving distance (within 3 hours or so) so your note is very helpful. What were your pre-op stats? Anyone else out there with suggestions, fire away.

Zufus, appreciate the grins.

Tony

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/1/2009 8:05 AM (GMT -6)   
Nothing wrong with choosing surgery or DaVinci method for candidates whom know there assessment and doc hopefully has done the appropriate things to make sure you get what makes sense.
Suggestions prior to jumping into any surgery (or other treatments):

1) learn about your risks, recovery and side effects prior (so you know)
2) ask doc whom did the pathology? Ask to have it reviewed by some of those few experts: Bostwick, Epstein, Oppenheimer, Grignon and maybe a few others (found in books with names etc.)
3) take all your data and shove them into nomograms, partin tables, naryan tables or bluestein and/or trust the doc (your choice) to do all the math and give you the percentage odds of a curative surgery, which is the intent with many patients (maybe not all)
4) you should seek internet or books and have some idea of the many choices that are out there to either cure or control PCa.....not everyone gets cured no matter what the treatment is
5) make sure your doc has done perhaps 1000's of these proceedures or has a track record you can compare or read about somewhere....alot new guys with new robotics and not trained well enough are out there....hey it is a profittable business....ten of thousand of dollars for few hours of work. Alot of patients are given the 'rush hour' program.....you must have this gland removed by me at sunset or else!!! That is usually total b.s. and those patient that fit the right now program (nasty stats) you need to seek an oncologist prior to considering the knife....it if looks that ominous atleast know that curative surgery is likely not your future.

(but hey...don't take my word for it...forget about it....compare with what else you read and find)
 


ups4
Regular Member


Date Joined Nov 2008
Total Posts : 20
   Posted 2/1/2009 10:22 AM (GMT -6)   
Godfather said...
Sam (spisam)

Thanks. We're trying to find a top notch da Vinci surgeon within driving distance (within 3 hours or so) so your note is very helpful. What were your pre-op stats? Anyone else out there with suggestions, fire away.

Zufus, appreciate the grins.

Tony
Tony, just another suggestion and FYI.
I had the da Vinci surgery in 10/07. It was the best way to go for me. I didn't need the stupid organ anymore. I had a vasectomy about 20 years ago, so no more children planned. If it was cancerous, get it the hell out of me smilewinkgrin .
 
Anyway, my urologist is Dr. Daniel Ead and he's here in Plantation, FL, which is basically west Ft. Lauderdale. He's and excellent doctor and has performed many robotic prostatectomys.
 
Just thought I would add another bit of info for you to consider.
Good luck and wishing you well in your journey.
 
Paul

Paul in Sunrise, FL
Diagnosed 7/07 age 52, 53 now.
PSA 2.5-3.5 at diagnosis.
Biopsy proved positive.
Davinci surgery 10/07.
All nerve bundles/lymph nodes spared.
Continence returned by 12/07.
ED getting better everyday w/Viagra.
PSA's post surgery all <.01.
Dr. Daniel Ead, Urologist in Plantation FL
Latest PSA results from 1/12/09=.01


Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 2/1/2009 11:40 AM (GMT -6)   
Zufus,

While I'm leaning towards robotic LRP with Patel @ Florida Hospital in Orlando, have an appointment next week with an onocology center to discuss brachy (permanent and temporary), IMRT, Cyberknife, Tomotherapy, etc. With 6-8 weeks to wait before tx, I'll be making use of all of them to gather info.

I read every word so keep it coming.....thanks to OhioState, Les and Paul and the rest for your notes.

Tony
Age at diagnosis 61
Resides in SW Florida
12/07 PSA 2.6  12/08 PSA 4.0
Biopsy 1/09 - 6 of 8 nodes positive 
Left - 2 of 4 positive, 15% involved, 3+4=7 Gleason
Right - 4 of 4 positive, 40% involved, 4+3=7 Gleason
DRE small nodule on right - Prostate 22.6 cc's
Planning da Vinci - searching for surgeon


AstroNerd
Regular Member


Date Joined Sep 2008
Total Posts : 56
   Posted 2/2/2009 5:26 PM (GMT -6)   
Don't leave Moffitt off your short list... First class operation. Cancer is all Moffitt does. My doc was Pow-Sang - he's the div chief and you'll be hard pressed to find a better doctor (or one with a better rep).

cheers & beers,
Chris
Diagnosed on 9/23/2008, age 47
Gleason 6, T1c
da Vinci LRP performed 1/22/2009 at Moffitt Cancer Center
catheter due out on 2/4/2009

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